Dear Charlie, we are just two days away from your 5th birthday, where has that time gone. This year would have marked your first year at school, your first nativity, your first sports day. I’m sure by now Harry would have had you playing football and training you up to be as great as he is. I imagine Lottie would have got you into all sorts of fun outdoor adventures, and Molly would just be wandering around getting into all your games and toys. This year we have your other baby sister celebrating with us.

Emmie is just 20 weeks old. I’m sure she is another gift from you. We were so very lucky when Emmie was born, she gave us a little scare and had to have a Sepsis screen at just a couple of hours old, it was reassuring to know all these changes and how the staff reacted were made following the lessons learnt in your death. Whilst we sat in the hospital room waiting for news from the neonatal unit, a beautiful rainbow appeared in the sky, was that your sign that you were there and watching over her. Luckily Emmie was fine, the staff were amazing. Harry noticed when Emmie was a couple of weeks old that her belly button is the shape of a ‘c’, he said it’s a gift from you. It’s funny all the little things we cling to and cherish that thought that you are there and still watching and playing your part in our lives. It was discovered when Emmie was 6weeks old she has hip dysplasia, both hips affected, so we have been having regular trips to the hospital for physio and hip scans. Emmie has had to wear a harness since 6 weeks of age, the last two weeks she has only worn it at night, we got the amazing news she could come out of her harness full time on Saturday. A normal day to some but your birthday, is this another gift to us from you?

With your birthday fast approaching, I wanted to do something a bit fun, something a little boy of five would like, to celebrate the short but loved life you had. I will again be donating to Aching arms charity, where a bear will be donated in your memory to another bereaved family, this is something me and Daddy will do every year, it gives us a little bit of comfort knowing bears in your memory will comfort others. So back to this year, we have decided to share little acts of random kindness, there will be five gifts, as it is your 5th birthday, and as a family we will place them in little places around where we live for others to find, and bring a little smile to others. I will post photos and more details on the day, a day to celebrate the amazing little boy we had but couldn’t keep.

This year is a bit like five years ago Charlie, so I am finding it a bit harder, you were born on a Saturday, and died on the Sunday. This year we will smile, and be thankful for the short time we had with you, thankful that our legal case is over, thankful for your brother and sisters we are lucky to have with us on earth. Most of all I promise this year I will spend Saturday smiling at your memory, the cuddles, the smell of your baby soft skin, long finger nails, soft fluff of hair and the amazing entry into this world you made, so quick, so unexpected and amazingly on your due date. Shine down on us Saturday Charlie, I love you so very much, and I miss you every single day. I cannot wait for the day I get to hold you in my arms and sing you happy birthday.

Where do I start., well firstly you are going to be a big brother again, this little rainbow is due just before Christmas, so a hectic December this year.

I’m lucky enough to have the care of the same midwife who cared for me and Molly, and a sigh of relief that one of the midwives who failed you is no longer around.

We are excited, nervous and a bit scared. Even though we had Molly, it doesn’t make it any easier, still the worry of if this one will survive.

We miss you every day. Recently I have been wondering what happens when you die? Do you stay as a baby? Do you grow up? How will I recognise you and vice versa? I visited a spiritualist church a couple of weeks and had the chance to talk to an amazing man, he said you will continue to grow as you would on earth, so you would be four now, running around kicking a ball, attending preschool and bickering with Harry and Lottie. He also explained that part of your learning in the afterlife is learning how to come back to visit your family. Until you can do this yourself you will be helped by family who have passed. And it will be our grandparents helping to raise and guide you. And the most wonderful thing he said,was when it is my time to come, you will meet me with family, we will be introduced, although you will know straight away I’m mummy. I cannot wait for this day, I promise I will never ever let you go.

Until that day, I will continue to educate people about you, the errors made by the professionals, and your story. We will forever miss you, forever long to have you here , and forever love you.

It feels like a lifetime since I last blogged. I can’t believe another year is over. Another year without you.

How are you meant to move on following the loss of your child? I have been diagnosed with a complicated grief adjustment disorder. How could anyone not have their mind and emotions completely blown by what has happened. How am I meant to adjust to life without you? Should I stop wondering what you would become? Should I just accept you will always be our baby who flies instead of walks? Should I just accept some people just don’t like to talk about you or to acknowledge you in front of us or your siblings?

Counselling is tough, but it is a good kind of tough. My memories are so stuck at 29 hours of trauma, excitement, and more trauma, that I have been advised to extend my memories to include my pregnancy, the music you liked, the scans, the excitement of you.

I have done a lot of revisiting lately. I went through your memory box, I looked through the birth congratulation cards a well as sympathy cards. It reminded me due to the speed we had you and lost you we had a couple of weeks of receiving both birth and sympathy cards at the same time. I remember the Tesco delivery man arriving just a couple of days after loosing you, and he congratulated me, I then had to correct him and say ” we did have a little boy, but he died”. It was and still feels so normal for me to talk about, I feel so detached from it all.

I have gone through the press cuttings following your death, the inquest and the learning. When I feel stronger I will be compiling them all to tell the full story of you Charlie. Right now they are just kept safe.

The most precious thing I have, that still smells of you is my cardigan. The last few weeks I have taken to lifting it out of the box and just smelling it. Weird for some but it takes me back, back to you in my arms. I love that smell and I hope it will never go, but I have a feeling it will, like memories fade into the distance, I worry the smell will to.

Just lately going through daddy’s camera, we discovered some pictures (we forgot all about them), taken just 1 month before you were born. They capture a beautiful moment of mummy, Lottie and Harry’s hands all on my Bump, you. We were all so excited. Finding these few photos have been both amazing and heartbreaking. Amazing as I remember it was Easter, we were all so excited, Harry and Lottie loved feeling you move. But also heartbreaking, because in that picture you were safe, you were alive, you were a wonderful surprise.

Revisiting is tough, but it reminds me of how important it is we talk about you, we allow your siblings to talk about you, to wonder what you would be like. We understand not everyone thinks like we do, not everyone wants to talk about you, and as much as it hurts as it feels they don’t care, that is their choice and we can’t change them.

But it reminds me that when someone you love dies they don’t disappear, they just move on, they are always there, just a heartbeat away. Charlie you will always remain in our hearts and our lives. We will continue to tell your story to ensure people learn, we will openly talk about you, and wonder what you would be like, we will continue to sign your name on our cards.

An important lesson I have learnt on this journey, is that just the simple acknowledgment of your name in our family card means the world to me. As a mum to know my child is talked about and mentioned shows they aren’t forgotten. They aren’t making me sad by reminding me you died, they make me happy and proud that they have remembered you and aren’t afraid to talk about you.

As another year closes and a new one begins, I wonder what it will bring?

You will forever be our robin in winter time who visits the garden, a beautiful white butterfly that flutters with us wherever we go and the delicate white fluffy feathers that land at our feet when we need you the most.

This week I did something I didn’t think I could do. I put up a new photo of our family. Yes a normal thing for a family to do. But a really big change for me.

When you died we realised we had very few photos of you, the ones we did have we cherish, and have a few of these as well as your foot prints on our wall in the lounge.

But this week I realised we have no photos of your sister (our rainbow) up. After talking with my counsellor about this change, that I didn’t want to remove your pictures, I made the decision of replacing one of me, daddy, Harry and Lottie. In a way you were with us in this picture, I was pregnant with you. A precious surprise. This was the easiest photo I could replace. I couldn’t bear to take down any of your beautiful face with soft hair and chubby cheeks.

I quietly replaced it with one we had taken at Grandads in Kent, a sunny day and a snap of us all together, Lottie being funny, Harry smiling, Molly squinting in sunlight. The only thing missing from the photo is your little face. Would you be running around refusing to join us for a picture, digging around in grandads garden?

I didn’t tell anyone I had replaced it, for me it was such a big thing. So quietly while everyone was out, I placed the beautiful snap amongst your pictures. We are all together, everyone included in one way.

And so now Molly also has her identity in our family, Molly is included in everything, but by no way does she replace you. She never could. She has just helped us to wake each day and carry on.

Molly now says your name, when we come to tidy up your grave, to lay fresh flowers she likes to play with your teddy, draw on your chalk board and play peekaboo behind your headstone. It’s lovely to hear, that she knows who we are visiting, but I also know she is beginning to understand and that the day draws closer where she will ask the inevitable questions who is Charlie? How old is he? Why did he die? These are easier to answer, he’s your big brother, he would be —— years old but he was only 29 hours when he grew his wings, sadly things were missed when he born and he died. But the hardest question of all, would I be here if Charlie lived? How do I answer that, I love her so much, I’m glad I have her, it doesn’t make loosing you any easier, it just gives us a little ray of sunshine on some very dark days.

Who knows where life leads us, how many babies we will be blessed with, or how long we get to keep them. But no matter how many, one doesn’t replace the other, they just teach us to cherish the ones we have a little bit more, to hold them a little tighter and longer, to enjoy the good times and the not so good times, the strops, the tantrums, as well as the achievements.

I like to think there’s a little bit of you in Molly, her cheeky character, her mischievousness. She has double the trouble to make and double the love to give.

No one can ever replace you Charlie, no picture on the wall will ever erase those precious few hours we had together, that first cuddle, that first feed, the skin to skin, the memories of your dark hair, long finger nails, chubby cheeks and that last precious cuddle when you grew your wings.

I haven’t blogged for a while. Too exhausted trying to put into words the madness in my head. But the last month has made me realise no matter what we do, there is still that gap where you should be.

Lottie finished her reception year, so proud of her mixed with emotions of you. You should be on my lap clapping and calling your big sister. She should be smiling and waving back. I wonder if she would be the same little person that she is today if we hadn’t lost you. She’s a ball of emotion and anxiety, which they say is from her understanding and response to grief and loss.

Harry finished year 3, and is still football mad. He has attended some football festivals in the last month, and today we had the chance to go and watch a presentation and clips of their two days of football. I sat there with so much pride for Harry, but you are never far from my thoughts. Would you like football? And so as I sat there with all the other parents a few tears trickled down my cheeks as I realise you didn’t just die that day, we lost our future with you, you lost the chance to experience life events.

There have been two occasions lately where your presence has really been vivid for me. Your siblings playing and chasing in the park, Harry leading, Lottie close behind and then a gap, followed by Molly trundling along. The gap is so clear you would slot perfectly into it. Which reminds me that even though you aren’t with us in person, there will be always be a gap where you belong. Another time it has happened was playing in the field with the dog. Again Harry leading, Lottie, a gap and Molly. It just proves to me Molly hasn’t replaced you in any way, all she has done is enabled us to love and cuddle another little person. But no matter what it’s you I still long for.

And so after a busy few weeks, and lots of events in the children’s lives, I go to bed tonight wondering what you would become? Would you like school? Would you like football? And knowing we will forever wonder what if????

People think it’s been three years now and we should be moving on, actually it’s been 1181 days since you grew your wings, and each day is hard. Missing you doesn’t get easier. I feel like I live in a parallel world. Before Charlie and after Charlie. I get up each day because I have to, there are three children here who deserve to have a life with memories, laughter etc. Each memory made with them is a memory missed with you. It’s all so bittersweet.

Well 4th June marks the 3 years since we held your funeral. Our final goodbye.

The night before we came down to the funeral directors for our last time with just you. Harry and Lottie had drawn on your beautiful white coffin, and we gave your duck to Sam, the funeral director. We had cuddled duck, gave him kisses and filled him with so much love. Before I left you that night I did one last thing. I picked up your coffin and held you. It was the closest I was going to get. How I wished I had actually asked to cuddle you. You were so light in that tiny white coffin. When we left that evening, Sam placed duck inside your coffin, to keep you company on your next journey. And then he sealed you in.

You had so many things in there with you, a football from Harry, duck from all of us, a book, photos, a letter, a decorated heart from Lottie. You were wrapped in your shawl which Nanna had knitted, I still have a piece under my pillow today. It still has your label from when your were rushed to hospital ‘baby Jermyn’. You had only had your name ‘Charlie’ just an hour before you slipped away.

We chose to have the funeral at a local hotel, where we had got married. We watched you come in. Carried so carefully. The flowers and teddy we had picked for you were placed beside you.

We had planned a beautiful service, with songs which meant a lot to us as a family, Kieran made a little speech, Sophie read a beautiful poem. Friends and family came to celebrate the short time you were with us.

It’s amazing how having so many of our close friends and family in a room yet you can still feel so lonely and unattached from the whole thing. I remember looking round and seeing others cry, yet I couldn’t cry, I couldn’t break in front of Harry and Lottie. And so I kept it deep inside.

The last song played was by Eric Clapton’s ‘tears in heaven’. I chose this one as the words were so fitting. ‘Would you recognise me when I come to heaven?’. To make this easier for you I have kept my cardigan and daddy’s jumper, safely tucked away. When the time comes we will be buried wearing them. Hopefully then you will recognise us. And what will you be Charlie? Will you be my 29 hour old baby? Or will you grow up as you would if you were here on earth.?

We visited your grave today. It’s looking beautiful. Certainly more beautiful than three years ago when we watched you being lowered. I still find some comfort knowing if I lie down there is just a short distance between us. How I long to hold you one last time.

And so three years on it isn’t any easier. The days are the same, long, lonely and wanting to be with you, yet at the same time manic with Harry, Lottie and Molly. I wish I could be in two places at once. I wish I could be the mummy to you that I am being to your siblings.

Three years ago we were let down by systems and procedures and policies within the NHS. Sepsis wasn’t very well known about then, not like it is nowadays. There is a massive campaign for the public to be aware of the signs and symptoms. Sadly we are one of those families that will forever live with the destroying affects of Sepsis.

In your short time Charlie you were seen by three midwives. Sadly these individuals didn’t have the training to identify you were poorly, dying before our eyes.

Midwife 1 assessed me at hospital, allowed me to go home, when in hindsight I should have been kept in hospital, you would have been born in hospital, and all the signs of invasive strep A and Sepsis would have been spotted and treated, with the high chance you would be here tonight.

Midwife 2, we first met her two days before you were due, she gave excellent advice on if we felt it was a quick labour not to get in the car, it was unhygienic. We saw her again the morning you arrived, she came to the house after four paramedics, she stayed with us for a couple of hours. She felt you were a well baby, that I was well. She didn’t feel there was any need to go to hospital to be checked.

Midwife 3 we first spoke to just 6 hours after your birth, you wouldn’t feed, you weren’t stirring for feeds, you were sleeping a lot, you were making a funny noise. She said she would get to us as soon as she could. Five hours later she came. You still hadn’t fed, she noticed you were grunting, but still didn’t admit you.

Midwife 4 we met the next morning, you had barely fed, you slept, you grunted. She noticed you were poorly. You collapsed in my arms and she tried to bring you back.

All these people could have made a difference. The very least they could do was apologise, to learn and to never make the same mistake again.

We pushed for answers when you died, Me and Daddy spent so many hours researching the trusts policies, of other cases where babies were born down the toilet, of neonatal infections. We were persistent with passing all the information we had found, all the policies that hadn’t been followed onto the coroner. She realised there was no way she could hold an inquest of a couple of hours, that this was much bigger than just a sad death. She got professionals from Bristol, London and Birmingham.

At the inquest was the first time me and Daddy faced some of the people involved. There were 13 witnesses plus reports from others.

We were asked by the Trust if we would meet the four midwives involved, away from the camera and press. We agreed. We felt it would be rude not to, and at the end of the day they didn’t intend for you to die, did they?

Even today Charlie I find it hard to accept that they learnt lessons from your life and death. Midwife 1 apologised and said she wished she hadn’t sent me home. Midwife 2, didn’t apologise, just asked how we all were. Midwife 3 was clearly upset and had learnt from it all, she apologised. And midwife 4, well she was the one who had to resuscitate you, she was so sorry.

They all took the stand, they all gave their evidence. They got questioned by the coroner and the professionals as well as our legal team. Three of them were sorry, sadly there was one midwife who remained defensive, she failed to apologise, she failed to accept there was things she could’ve done differently. She remained defensive throughout.

Following various meetings to improve services for other families, we have learnt midwife 3 had taken time off, due to the stress and press coverage she received. She has recently gone back to work but no longer does newborn baby checks, it’s affected her confidence. Midwife 4 continued to work, but was woken for a long time after with nightmares, she could feel your lips on hers as she resuscitated you.

But midwife 2 continued to work, failed to acknowledge us whenever our paths crossed. First I was sad that she couldn’t even speak to us but this slowly bubbled to anger. A boiling bubbling anger that lead me to ask questions about her practice, her learning from it all. We got told that sadly she was diagnosed and it was terminal, that she was off sick so the trust couldn’t even pass on the questions I had that I needed answers to, that only she could answer. I asked to be able to email, for them to pass it on, to explain that it was for closure for me.

I finally got access to some of her reflective learning, which took a lot of asking for. And as much as I told everyone “that’s ok, if that’s all I get I can accept it”, what I was still longing for, hoping for was that there would come a day where she would be able to have a meeting with me, to answer an email, to give me the answers I needed to move and most importantly to tell me “I’m sorry”.

At my recent counselling session I got told she had passed away. And what did I do. I burst out crying, uncontrollable crying that I couldn’t explain. When I could finally catch breath I was able to say ” well that’s it then, she’s never going to apologise”.

Everything I had hoped for had gone. Just two simple words.

A massive part of me is filled with anger and hate. She got away with it, she didn’t apologise and she didn’t learn. And at the moment this is how I feel. There is a small part of me that does feel sorry for her family, for her young grandchildren. But there’s a bigger part of me with a longing that will never come.

You changed our lives Charlie, and I know you have made changes within the NHS, that there are professionals that think of you on your anniversary.

Some people have said maybe she couldn’t apologise because it would have meant her accepting she could have made a difference, that now she is in heaven she has found you and apologised to you. And yes that is a nice thought. However she beat me to it. She got to see you again before I did. Somehow I have to find peace with this feeling of longing, and right now I’m not sure how.